No argument. One reason I’m not real enthusiastic about this group is that they make statements like this and simply expect us to accept them without providing enough information or documentation.
Red Stilettos, you are the smartest. This is exactly the right question to ask. And I don’t have a good answer for you. But, at a minimum, I would expect skin scrapings negative for scabies and the ruling out of some or most of the main causes of secondary DOP (drug abuse, diabetes, thyroid problems, vitamin b-12 deficiencies, schizophrenia, and dementia–this last might present some problems, but some effort should be made to at least indicate that dementia does not appear to be present). Bloodwork for the white blood cells typically elevated in response to a parasitic infection like scabies (not terribly diagnositic, I believe, because I think they are also elevated in response to allergens). If the patient has not had the symptoms for a long time, those transient parasites–bird mites, swimmers itch if appropriate, etc.–should be considered. Patients should also probably be checked for higher than normal levels of demodex mites, and for allergic response to demodex mites. (Oh, goodness, this is becoming a wish list. None of this will ever happen.)
And I believe that a black-light examination can also be useful–I’ll have to check on why and what it demonstrates or confirms or rules out. This seems easy and cheap and if useful should probably become a standard protocol.
I would also like to see the derms simply study the skin visually and under the microscope for abnormalities and the presence of any obvious foreign materials.
Beyond that, I believe that, given the high incidence of Lyme disease reported by some researchers, and the relatively high incidence of Babesiosis as a co-infection of Lyme Disease, I think it would be prudent to test for both Lyme disease and the presence of babesia, and treat them if necessary before diagnosing DOP.
Then there is the question of toxoplasmosis. My attention has recently been directed to this in my own case because, 13 years before I ever experienced “parasite” symptoms, I was diagnosed with PLEVA, which I have just learned has been connected to toxoplasmosis. PLEVA has a lot of similarities to the illness I call an unidentified parasite, but without the itching or crawling sensations. I’m still thinking about this, but it might be at least reasonable to test for toxoplasmosis and treat it if present. Of course, it’s somewhat unfair to expect this now, with the relative general lack of knowledge about either PLEVA or toxoplasmosis by derms. PLEVA is so rare that I have been told most derms won’t ever see a case of it. Still, for purposes of eliminating the possibility that toxoplasmosis might be implicated in this other illness, it might be one place to start changing the protocol. It would also make an excellent place for researchers to begin. If, as a 1989 study says, eliminating toxoplasmosis cleared PLEVA lesions, it would be a good research project to see if it would also clear this other thing.
And then there is the difficult question of leishmaniasis. Although only known to occur in humans in Texas within the US, its presence in dogs in 21 of our states is a worry. I remember reading a researcher who stated that wherever leish is found in dogs, it is also found in humans, but I’ve lost the cite. The disease is not well understood and it is possible that strains of it in temperate regions produce very mild symptoms. But I suppose it’s unreasonable for me to expect derms to order up leishmaniasis tests for most of us, and they might not be accurate anyway if we’re dealing with a new strain. However, given the concern by the researchers studying the problem in dogs (including some with very impressive credentials–the researchers, not the dogs) that the parasite could begin to infect humans, it would probably be a good idea to start some kind of pilot screening study just to check the population for this potential problem. Again, pretty unlikely and probably not fair to expect in retrospect.
But, to answer your question, at this point probably no existing reports would seem convincing to me. I have seen and heard from too many people with lesions, too many people who are sick, too many people reporting identical symptoms, and too many people who want to get well, to be convinced now that they are all delusional. The problem is worldwide, although more prevalent in some areas than other. I think the identical nature of the course of illness in so many cases among people who have never been in contact with each other is probably most convincing to me. I have just heard from an acarologist in South Africa who has seen dozens of people with the same symptoms I have, who does not believe they are delusional, and who feels helpless in the face of their suffering.
I do believe that the vast majority of us suffer from an unknown illness, which really does not seem like such a preposterous idea that it merits us being labeled delusional, even if it does involve parasites. What I want is research–skilled, careful, well-designed research to do everything possible to locate the causative organism. I think it will be very hard to do; I think this thing is very difficult to detect; I think it might take years. And in the meantime, I want the derms to stop rolling their eyes and smirking. The amount of pain they are causing is incredible. I think that rather than diagnosing us as delusional, it would be more appropriate to diagnose us with an unknown illness and to offer support for getting some of the testing done that I have suggested. I know of no cure for this condition, but I don’t think psychopharmaceuticals are the best prescription. Many of us have found things that are less dangerous that offer symptomatic relief. And there are good reasons that they work. They probably represent a better, safer alternative than powerful anti-psychotics or than abandoning the patient to his or her own devices.
So you have caught me out, Red. I am unconvinceable. But I do think writers should work towards a higher level of proof and provide more details than that article I just read.